[adenure]

in reply to: breastfeeding with Graves? #1172562

The big, bad mom- guilt monster. I hear you there; we all have it in one way or another. The what if’s and how we could’ve done things differently. My endo. said something to me once (well maybe a few times)… he said if you read everything, you’ll never do anything. I research stuff soooo much that at times, it becomes paralyzing! Like when I was searching for treatment options and reading all the side effects and possible ways things could go wrong. My goodness, I couldn’t make a choice for anything about what to do about ATD’s (in the beginning), surgery, RAI etc etc… All of a sudden you’re stuck and don’t do anything to make your life better or move forward.

I think what we have to do is do our homework (so to speak), learn what we can/ become educated, talk with our doctors and then make the decision that seems to be the best one for ourselves, hope for the best and don’t look back. I know it sounds way easier than it is, but every choice we make has the possibility of having something going wrong— even something as simple as walking out the door and going to the store. Who knows what will happen, but are we going to stay in our house the rest of our life? Hopefully not. You and I both have Graves, we’ve both been treated (you with RAI, me with surgery), we’re both breastfeeding our babies. Might we pass the antibodies? I don’t know- it sounds like you read 2-5%? I had never heard of it, my doctors never mentioned it. I suppose there is a possibility, but I don’t see it as being on the same level as other illnesses- like someone breastfeeding who has HIV for example. So, even though I read your post, I still feel comfortable nursing my son. I’m going to make the choice to continue nursing feeling that the benefit of breastmilk for him outweighs the outside chance of him receiving Graves antibodies. You might choose differently and that’s okay too. But, like my endo. said, at some point you have to make a choice in order to be at peace and move forward- knowing that nothing is a guarantee. Believe me, I have plenty of those if I had done this, maybe my child wouldn’t be dealing with that (I have 3 other boys)… but, who is to say what they deal with has anything to do with what I did. For example, I didn’t nurse my 1st son (he only nursed 1 month) and he suffers from asthma and severe anaphylaxis to peanuts. What if I had breastfed him & dealt with the pain early on; maybe he wouldn’t have asthma & food allergies. But who’s to say? It’s that kind of thing that haunts us, but we can’t beat ourselves up over it- or try not to anyway.

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172509

Haha! Funny! Yes, I’ve learned to talk, but to stop when I get tired or sore. My voice is coming back a little stronger each day. I’m finding that I’m finally able to talk from “down lower” in my throat than at first (where I was more talking from the top of throat/ voice if that makes sense). So, I can tell there are improvements. I’m one week post- op. today.

Alexis

[adenure]

in reply to: breastfeeding with Graves? #1172559

Hi

I was diagnosed with Graves and had/ have the antibodies present in my blood. I didn’t stop breastfeeding at all, but my son never was hyperthyroid. We tested his TSH after I was diagnosed and started methimazole just to get a baseline for his TSH & make sure the methimazole that I was taking wasn’t effecting him. My endo, my pediatrician & my primary care doctor- none of them ever mentioned I could pass antibodies to him. Maybe it is different for a baby who is currently hyper, but I’m not sure. I never thought to ask and they never said anything. My baby is 7 months old and had his 6 mo. well visit and was fine. Again, no one ever mentioned anything about passing the antibodies. I did a whole boat load of research about Graves and breastfeeding, medications and the like and I never saw anything about a mom having to stop nursing because she has Graves (for that sole reason that is). I did wean temporarly to get an uptake scan & to take meds. to prep. for surgery, but that was all. I also remember when RAI was presented to me as an option, I was told that although I couldn’t nurse my current child again, if I had another baby in the future, I could safely nurse him/ her.

Alexis

[adenure]

in reply to: Breast reduction #1172541

First I’ve heard of it- especially since you’re past menopause & RAI. It seems like all the hormonal fluctuations would be more or less calmed down at this point? I don’t know. Did you ever mention to him that you wanted to get that surgery done? Maybe he’s saying it’s safe to do now at this point bc your hormones are stable- beats me.

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172507

Thank you ncpatches! I hope your shoulder heals completely. How is your thyroid treating you? Today is day 6 after surgery and I’m starting to feel better! I can honestly say that I feel better now than I did before surgery. Not 100%, but I think I’m on the road to recovery and being myself again- very exciting! I’m going to continue taking it slowly to recuperate, but I’m starting to see that light- that hope that I will be “me” again and that there are glimpses of the old me coming back. YAY!

Alexis

[adenure]

in reply to: GD and breastfeeding #1172526

One thing I felt about the breastfeeding was that it was kind of my connection to “normalcy”. Maybe you feel that way too? Breastfeeding gives you those calming, happy hormones and with all the wacky thyroid hormones, nursing just helped me. So, I can understand wanting to breastfeed- especially through this time. Like Shirley said to me once, “I get it”. So, know that we understand. Getting well is your number 1 priority, but I’m hoping you will be able to do that and continue nursing. Maybe your endo. will be willing to start you on 20 mg. of methimazole; did he say what dose he wanted to give you?

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172505

Hi Severage,

7 years- wow! You have a lot of patience! Today (4th day after surgery), I’m doing pretty well. Voice is maybe a tad stronger, not sure- but it works! I went for a walk around the block today with my mom, husband & baby. I still get the “woozy” feeling I’ve had through out my Graves journey. Kind of a being on a sail boat feeling/ floatie sensation that comes and goes. Every other hyper symptom is gone though, and that is a big relief. I get to sleep in my bed tonight instead of the recliner, so that will be nice too. I’m down to taking 2 Advil when I need it. I’ve taken it once today so far and don’t feel too badly. My mom tells me what everyone else always says here— that I’ve been sick for awhile (6 months) and getting strong again and everything normalized will take time. Good luck to you and meeting with the surgeon. It is wise to wait for the right surgeon; it makes a world of difference in feeling confident & in the outcome.

Alexis

[adenure]

in reply to: GD and breastfeeding #1172523

Hi again

I agree with Bobbi. Getting treatment is number 1 right now. As my endocrinologist put it, you need to be well for your family. I also wanted to say that I would take Dr. Hale’s info. I posted and talk with your endocrinologist and pediatrician. If your endo. is totally against it, maybe find a 2nd opinion, but I think getting your pediatrician’s okay is important since he/she is your baby’s doctor & we’re talking about the effect the drug will have on your baby. Maintaining a good relationship with your endo. is important as Graves is a journey, and you want someone who you can communicate with and who will hear your concerns and work with you the best way possible. But, yes, if you require a bigger dose of methimazole/ carbimazole than 20 mg. and that is the way you need to heal, then it is very important that you do what is needed to get better. Again, I think PTU dosing is allowed to go higher as far as breastfeeding goes bc it does not secrete as heavily into breastmilk, so if your endo. is agreeable, maybe you want to try that first. My endo. was willing to let me choose between the 2 meds. I went with methimazole bc it’s considered the safer of the 2 drugs for the person taking it (as far as the liver etc…- although not for me- kind of glad I didn’t go with PTU!).

I know my first post might sound like I’m defying your doctor. I just want you to know that, with certain doses and the right circumstances, breastfeeding is possible while dealing with Graves and the medications. But, yes, DO get treatment. That is first and foremost.

Alexis

[adenure]

in reply to: GD and breastfeeding #1172521

Here we are! Dr. Hale’s studies & info. on methimazole & PTU. Also, Shirley on the board breastfed her baby through out her journey with Graves as well.

METHIMAZOLE

Trade Names: Tapazole

Uses: Antithyroid agent

LRC: L3

AAP: Maternal Medication Usually Compatible with Breastfeeding

Methimazole, carbimazole, and propylthiouracil are used to inhibit the secretion of thyroxine. Carbimazole is a prodrug of methimazole and is rapidly converted to methimazole. Milk levels of methimazole depend on maternal dose but appear too low to produce clinical effect. In one study of a patient receiving 2.5 mg methimazole every 12 hours, the milk/serum ratio was 1.16, and the dose per day was calculated at 16-39 µg methimazole. This was equivalent to 7-16% of the maternal dose. In a study of 35 lactating women receiving 5 to 20 mg/day of methimazole, no changes in the infant thyroid function were noted in any infant, even those at higher doses. Further, studies by Lamberg in 11 women, who were treated with the methimazole derivative carbimazole (5-15 mg daily, equal to 3.3 -10 mg methimazole), found all 11 infants had normal thyroid function following maternal treatments. Thus, in small maternal doses, methimazole may also be safe for the nursing mother. In a study of a woman with twins who was receiving up to 30 mg carbimazole daily, the average methimazole concentration in milk was 43 µg/L. The average plasma concentrations in the twin infants were 45 and 52 ng/mL, which is below therapeutic range. Methimazole milk concentrations peaked at 2-4 hours after a carbimazole dose. No changes in thyroid function in these infants were noted. In a large study of over 134 thyrotoxic lactating mothers and their infants. Methimazole therapy was initiated at 10-30 mg/day for one month, and reduced to 5-10 mg/day subsequently. Even at methimazole doses of 20 mg/day, no changes in infant TSH, T4 or T3 were noted in over 12 months of study. The authors conclude that both PTU and methimazole can safely be administered during lactation. However, during the first few months of therapy, monitoring of infant thyroid functioning is recommended.

Pregnancy Risk Category: D, D

Lactation Risk Category: L3, L3

Adult Concerns: Hypothyroidism, hepatic dysfunction, bleeding, drowsiness, skin rash, nausea, vomiting, fever.

Pediatric Concerns: None reported in several studies, but propylthiouracil may be a preferred choice in breastfeeding women.

Drug Interactions: Use with iodinated glycerol, lithium, and potassium iodide may increase toxicity.

Relative Infant Dose Range: 2.3%

Adult Dose: 5-30 mg daily.

Alternatives: Propylthiouracil

T½ = 6-13 hours M/P = 1.0
PHL = PB = 0%
Tmax = 1 hour Oral = 80-95%
MW = 114 pKa = 11.64
Vd =
References
1. Tegler L, Lindstrom B. Antithyroid drugs in milk. Lancet 1980; 2(8194):591.
2. Azizi F. Effect of methimazole treatment of maternal thyrotoxicosis on thyroid function in breast-feeding infants. J Pediatr 1996; 128(6):855-858.
3. Lamberg BA, Ikonen E, Osterlund K, Teramo K, Pekonen F, Peltola J, Valimaki M. Antithyroid treatment of maternal hyperthyroidism during lactation. Clin Endocrinol (Oxf) 1984; 21(1):81-87.
4. Rylance GW, Woods CG, Donnelly MC, Oliver JS, Alexander WD. Carbimazole and breastfeeding. Lancet 1987; 1(8538):928.
5. Azizi F, Khoshniat M, Bahrainian M, Hedayati M. Thyroid function and intellectual development of infants nursed by mothers taking methimazole. J Clin Endocrinol Metab 2000; 85(9):3233-3238.

PROPYLTHIOURACIL

Trade Names: PTU, Propyl-Thyracil

Uses: Antithyroid

LRC: L2

AAP: Maternal Medication Usually Compatible with Breastfeeding

Propylthiouracil reduces the production and secretion of thyroxine by the thyroid gland. Only small amounts are secreted into breastmilk. Reports thus far suggest that levels absorbed by infant are too low to produce side effects. In one study of nine patients given 400 mg doses, mean serum and milk levels were 7.7 mg/L and 0.7 mg/L respectively. No changes in infant thyroid have been reported. PTU is the best of antithyroid medications for use in lactating mothers. Monitor infant thyroid function (T4, TSH) carefully during therapy.

Pregnancy Risk Category: D, D

Lactation Risk Category: L2, L2

Adult Concerns: Hypothyroidism, liver toxicity, aplastic anemia, anemia.

Pediatric Concerns: None reported, but observed closely for thyroid function.

Drug Interactions: Activity of oral anticoagulants may be potentiated by PTU associated anti-vitamin K activity.

Relative Infant Dose Range: 1.8%

Adult Dose: 100 mg TID

Alternatives:

T½ = 1.5-5 hours M/P = 0.1
PHL = PB = 80-95%
Tmax = 1 hours Oral = 50-95%
MW = 170 pKa = 12.89
Vd = 0.87
References
1. Cooper DS. Antithyroid drugs: to breast-feed or not to breast-feed. Am J Obstet Gynecol 1987; 157(2):234-235.
2. Kampmann JP, Johansen K, Hansen JM, Helweg J. Propylthiouracil in human milk. Revision of a dogma. Lancet 1980; 1(8171):736-737.

[adenure]

in reply to: GD and breastfeeding #1172520

Hello!!!
Welcome I was you just a short 6 months ago! I was diagnosed with Graves after my 4th son was born, and I was and STILL AM breastfeeding! YES, you CAN breastfeed through everything except RAI!!! The 2 ATD (anti thyroid drugs) you are probably going to be offered are PTU or methimazole (maybe carbimazole? bc of wear you live?) I took methimazole (5 mg daily) and continued to breastfeed. Methimazole is considered safe for breastfeeding for up to 20 mg. a day. It does pass through breastmilk, but it has never been shown (in studies) to cause a problem to a breastfeeding infant. It is recommended, however, to get a baseline TSH of your baby just to test his blood work every 3 months to make sure he is okay. My endocrinologist & pediatrician were completely fine with me nursing my infant while on methimazole. PTU is also fine for breastfeeding (actually it does not pass into breastmilk as much as methimazole). PTU is also safe for pregnancy. You will find information that methimazole is not safe for breastfeeding. Again, Dr. Thomas Hale (who specializes in medicines in mother’s milk) has deemed it safe (again, in a dose that is 20 mg. or less a day). You do not have to wean. No, I am not a doctor, but I have done a TON of research, questioned my endocrinologist and pediatrician and my La Leche League consultant friend and they all said it was fine. My LLL friend had & nursed 4 children on both drugs over a 10 year span. As a side note, PTU is considered an L-2 drug (“safer”) and methimazole is considered an L-3 (moderately safe). L-1 is considered safest (like Tylenol for example). L-4 is still considered safe and L-5 would be shown to cause problems. Often L-3 status drugs are not necessarily unsafe, it’s that they haven’t been tested enough to warrant an L-2. There have been studies (per Dr. Thomas Hale) with methimazole though and again, no infants had an adverse effect to nursing on up to 20 mg. a day. I do not have the studies accessible to me right now (I’m not at home for the next week), but if I can find them, I will post them for you so you can see the actual studies. I did post them on the forum a month or so ago, so it might be around somewhere if you do a search with the key word breastfeeding or Dr. Hale.

To take care of yourself, when you get your blood work, do ask to have a liver panel to check your enzymes as both of the ATD drugs can (although rare) damage your liver. I happened to be that rare 1% & had to stop the methimazole after 7 weeks time. So, in the end, I got a thyroidectomy (surgery) to treat my Graves. Actually I just had the surgery this past Friday!!! I did have to wean for the 7 days leading up to it to take a prep. medication for surgery (SSKI- potassium iodine drops). I pumped & dumped and my baby is nursing happily again.

If your doctor wants you to get an uptake scan you can get it done with a temporary weaning of 3-5 days depending on the isotope used. But, you will have to check with the nuclear doctor to see what they’re using. I-123 has a very short half life and as long as there is no I-131 being used and the amount of I-125 is very minimal, you only have to wean temporarily. It sounds as if you have been diagnosed without the scan though, so you probably won’t need the uptake scan unless you decide to treat your Graves with RAI (radioactive iodine). I-131 is used for the treatment and that does require complete weaning for your baby. Any babies you would have later in life you could breastfeed though.

Stay positive and strong and know that yes, you can continue to breastfeed through all of this with the precautions of TSH testing for your baby and a lower dosage of methimazole (under 20 mg). I believe the dosage for PTU
and safety with breastfeeding is fairly high.

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172503

The surgery was Friday morning, so I’m on day 3. I notice my voice being weak. I guess with 4 boys I’m used to being loud(er) than I am now. Plus my voice tires if I talk too much. It’s a bit frustrating. I guess it’ll get better; my mom & her hospital friends assure me it will. It’s hard waiting for things to be normal. But, I know totally normal needs some time. I have to remember all the positives though: the thyroid is gone & I don’t have anymore hyper symptoms, I can breathe perfectly fine, I can eat anything & swallow well, and I CAN talk- even if it isn’t very strong yet. I’ve started my Synthroid and feel okay for the time being. Hopefully the dose will be pretty close to what I need. I’m walking around and doing pretty well for day 3 I guess!

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172500

Thanks all. Shirley, how long did it take for your voice to be “strong” again? I can talk and it sounds like me, it’s pretty clear, but it’s not strong and I tire after a few minutes. Kind of frustrating, but I guess it’s to be expected. I’m eating anything now which is good- even raw carrots! I can swallow pretty much like I did before and breathing is fine too. Hoping to get my voice stronger with time though.

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172501

Thanks all. Shirley, how long did it take for your voice to be “strong” again? I can talk and it sounds like me, it’s pretty clear, but it’s not strong and I tire after a few minutes. Kind of frustrating, but I guess it’s to be expected. I’m eating anything now which is good- even raw carrots! I can swallow pretty much like I did before and breathing is fine too. Hoping to get my voice stronger with time though.

Alexis

[adenure]

in reply to: Just Diagnosed!!! And Scared! #1172475

I just wanted to say hi too & understand the fear. I was diagnosed after having my 4th baby. I had the muscle weakness, fast heart rate, shaky feeling inside, minor tremors, emotionally/ mentally fearful, insomnia was really bad. It is scary; totally normal to feel that way! I think Graves (when we’re hyper) fuels fear and anxiety quite a bit. I was on methimazole (5 mg daily) for 7 weeks. It helped my thyroid get normal and I started feeling better after 2 weeks. Unfortunately, it was damaging my liver, so I had to stop taking it. Fortunately, my thyroid stayed stable long enough (6 weeks) for me to be able to have my thyroidectomy this past Friday. I’m on Synthroid (100mcg) daily and will get bloodwork done in 2 weeks to see how I’m doing. I can say that the hyper symptoms are gone, but I am still weak physcially (from the surgery and the Graves I think), but knowing that I won’t go hyper anymore from Graves is a very reassuring thing.

My advice is to try the medication. Do ask for a liver panel test though just to make sure you’re okay there. I didn’t have any of the symptoms of liver problems (fever, jaundice, dark urine, sore throat), but the enzymes were quite elevated all the same. Once your levels are stable, then you can decide if you want to stay on the meds. or opt for a more definitive solution (RAI or surgery). I too LOVED to exercise- spinning, swimming- I’ve always been really active my whole life. It was really hard to have to stop doing anything for so long, but when walking down the hall gets the heart rate close to 100 at times (!) you have to be careful. On the methimazole, my heartrate did get back down to 62 (my normal), so that was good. But, it’s amazing how fast your muscle goes with Graves- at least with me it did. But, I’m going for light walks now and doing the best I can.

Alexis

[adenure]

in reply to: Successful Thyroidectomy! #1172494

Thanks Shirley One job I had before I had my boys was an editor! Hee hee!

Also, as far as eating, I’m doing pretty well there. I’m sticking with soups and mushy stuff for the most part (beans, deviled eggs, orzo pasta). I can swallow the Advil with some thought and coordination. So, not too bad all in all. I will say though (and others have said this) that being confident in your surgeon is super important. I wasn’t 100% confident with the surgeon I first spoke with, but felt much better with the 2nd surgeon. Finding a very qualified, skilled surgeon with an excellent track record goes a long way in outcome and easing the nerves.

Alexis

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